Gender and Ethics Management Framework · ´ D6.2: Gender and Ethics Management Framework 5 By...

Project co-funded by the European Commission within H2020-EURO-2014-2015/H2020-EURO-6-2015

Dissemination Level

PU Public X

PP Restricted to other programme participants (including the Commission Services

RE Restricted to a group specified by the consortium (including the Commission Services

CO Confidential, only for members of the consortium (including the Commission Services)

Towards We-Government: Collective and participative

approaches for addressing local policy challenges

Grant Agreement number: 693514

Deliverable

D6.2

Gender and Ethics Management

Framework

Ref. Ares(2016)3613643 - 19/07/2016

´ D6.2: Gender and Ethics Management Framework

2

Author List

Organisation Name Contact Information

Empirica Lutz Kubitschke [email protected]

Empirica Karsten Gareis [email protected]

Status, Abstract, Keywords, Statement of originality

Dissemination level: Public

Contractual date of delivery: 30 Apr 2016

Actual date of delivery: 20 July 2016

Work Package: WP6 Overall Project Management

Type: Report

Approval Status: Final

Version: 1.0

Abstract

The report includes a detailed description of gender and ethics related requirements to be

met by the project according to requirements elicitation work conducted during the

project's start-up phase (Task 1.3) as well as related guidelines and templates to be

applied for adequately responding to the identified requirements (e.g. consent form). The

framework also includes a description of management procedures and tools to be applied

for compliance monitoring throughout the entire project duration.

Besides other ethics and gender related requirements identified in WP1, this will also

concern all requirements put forward in the Ethics Screening Report.

Keywords

Gender equality, data protection, privacy, research ethics, geo-referenced data, consent

form, confidentiality, vulnerable target groups, community based research, participatory

research

Statement of originality

The information in this document reflects only the author’s views and the European

Community is not liable for any use that may be made of the information contained

therein. The information in this document is provided as is and no guarantee or warranty

is given that the information is fit for any particular purpose. The user thereof uses the

information at its sole risk and liability.

mailto:[email protected]

mailto:[email protected]


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History

Version Date Activity Revised by

0.1 17/2/2016 Creation of the initial document structure Lutz Kubitschke

0.2 14/03/2016 Content added Karsten Gareis



0.8 04/07/2016 Peer review and additional content added

Lutz Kubitschke

0.9 15/07/2016 Additional content added and update of data protection framework issues

Lutz Kubitschke

1.0 19/07/2016 Finalisation, formatting and submission Karsten Gareis


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Contents

1 Introduction – About this document ................................................................................ 6

2 Ethical value frameworks and legislation of relevance to WeGovNow ............................ 7

2.1 Ethical research involving human beings .................................................................... 9

2.2 Participatory GIS and ethics ...................................................................................... 11

2.3 Data privacy .............................................................................................................. 12

2.3.1 European-level data privacy legislation ............................................................ 13

2.3.2 National-level data privacy legislation .............................................................. 15

2.3.3 Specific privacy aspects to the utilisation of geo-referenced data ................... 16

2.4 Ethical codes of conduct in the public sector ........................................................... 17

2.5 Gender equality ........................................................................................................ 18

3 WeGovNow ethics and gender management framework .............................................. 21

3.1 Generic guidance on beneficence and non-malfeasance of end users participating in

the project ................................................................................................................ 25

3.2 Generic guidance on recruitment of end users participating in the project............. 25

3.3 Generic guidance on informed consent .................................................................... 26

3.4 Generic guidance on formal ethics approval ............................................................ 26

3.5 Generic guidance on WeGovNow platform compliance with data protection

legislation .................................................................................................................. 28

3.6 Generic guidance on community engagement ......................................................... 29

3.7 Generic guidance on gender equality ....................................................................... 31

4 Annex: Consent form templates ..................................................................................... 34

4.1 Generic Consent Form Template – Anonymous Data ............................................... 34

4.2 Generic Consent Form Template- Confidential Data ................................................ 35

Executive Summary

The WeGovNow project aims at tapping into emerging technologies for effectively

supporting co-production by civic society stakeholders and collective proposition

development, whereby citizens are seen as partners as opposed to customers in the delivery

of public services. This is to be achieved by integrating a set of innovative ICT applications

within a unified citizen engagement platform. Being a typical H2020 Research and

Innovation project, the workplan of WeGovNow reflects different operational project stages.


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By adopting a coherent approach towards ethics across all pilot sites involved, the project

sets out to provide a solid basis for ethical service innovation in the local government

domain across different jurisdictions.

Beyond meeting legal data protection requirements, ethics here are about what the involved

stakeholders 'should' do as the right thing, for the good of individual residents, the

community, and society at large. Two main ethical perspectives deserve most attention:

First, a range of ethical issues relate to ensuring that research, technology development and

piloting activities follow commonly accepted ethical principles. Here, guidance can be

obtained from existing discourses on ethics in research fields that have relevance to the

project. Second, ethical issues arise in relation to deployment of mainstream government

services, as it is the ultimate goal of WeGovNow beyond the immediate project duration to

lead to the spread of effective, ICT-enhanced solutions for co-production and civic

participation at community level across Europe. Also, there are ethical concerns that cut

across the “research” and the “deployment” perspectives, such as ensuring data privacy in

relation to individuals participating in the technology development process and in relation to

citizens supposed to utilize the WeGovNow services beyond the immediate project duration.

Ensuring gender equality represents another area of concern cutting across the perspectives

of “research ethics” and “deployment ethics”. From a research perspective, gender

management in the framework of WeGovNow means, in particular, integrating gender

equality issues at each stage of the project cycle, following the three objectives of the

Commission’s activities on gender equality in Horizon 2020 (gender balance in research

teams; gender balance in decision-making; integrating gender analysis in research and

innovation content). From a deployment perspective, it needs to be ensured that women

and men are able to equally participate in the collaborative processes which are to be

ultimately supported by WeGovNow solutions.

The deliverable presents the wider picture against which the project’s approach to gender

and ethics management framework has been developed. It includes reference to key existing

frameworks and guides wherever relevant. While ‘cookbook’ type guidelines that can be

applied throughout the various stages of the project are not always useful to define in

advance, the document aims at presenting some ‘how to do’ guidance as well. Also included

are generic consent forms to be adapted to the various activities within which individuals are

to be involved throughout the project’s life cycle.

Continuous reporting vis-à-vis the Commission will be achieved via a dedicated section on

ethics and gender management to be included in the respective Periodic Technical Reports

which must be submitted by the coordinator following the end of each reporting period.


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1 Introduction – About this document

This document presents the WeGovNow Gender and Ethics Management Framework (D6.2).

It aims at providing operationally useful guidance to the project consortium on how

appropriate safeguards are to be achieved against relevant ethics and gender related issues

which are of relevance to this project. There has however not yet been any overall

compilation and analysis of ethics and gender related issues potentially applying in this field.

Appropriate guidance materials that could be used for the purposes of the project is thus not

available “off the shelf”, despite the fact that ethics and gender related issues are frequently

alluded to in the policy discourse on ICT-enabled solutions in the public services domain

more generally. The ethics and data protection framework adopted for the purposes of the

WeGovNow project therefore relies on various value frameworks potentially relevant to the

scope of the current project such as binding legislation and voluntary codes of conduct.

An important aspect deserving attention here is that ethical considerations are not always

‘black-or-white’ and that dilemmas can sometimes arise. In addition, even for a given group,

such as a resident from a disadvantaged group offered technology to support community

engagement, the issue of what is good may depend on the specifics of each individual

circumstance. Therefore, whilst universal ethical principles have value, their interpretation

and application in any specific context is often not straightforward. Thus ‘cookbook’ type

guidelines that can be applied throughout the various stages of the project are difficult to

define in advance.

The current document therefore aims at not just presenting ‘how to do’ guidance but also

the wider picture against which the project’s gender and ethics management framework has

been developed. It is hoped that that this will enable appropriate interpretation and

application of ethical principles throughout the project’s life cycle. The document is

structured as follows:

Chapter 2 identifies ethical and gender related requirements deserving attention throughout

the project’s life cycle, and suggests general guidelines on how the project team may best go

about meeting these respectively.

Chapter 3 describes how ethics and gender management will be implemented throughout

the project’s life cycle, as far as appropriate at the given stage of development in the project.

An update will be provided in subsequent deliverables, namely D1.2 “Consolidated

Conceptual & methodological framework v2”. D1.2 will, in particular, contain detailed

specifications about data protection measures concerning all piloting activities in which

personal data will be collected.

The Annex includes a generic consent form to be adapted to the various activities within

which individuals are to be involved throughout the project’s life cycle.

The present document is further complemented by the WeGovNow Data Management

Framework (D6.3) due in M6, which will includes a preliminary Data Management Plan for

the project.


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Based on the framework presented in these Deliverables, continuous reporting vis-à-vis the

Commission will be achieved via a dedicated section on ethics and gender management to

be included in the respective Periodic Technical Reports which must be submitted by the

coordinator following the end of each reporting period.

2 Ethical value frameworks and legislation of relevance to WeGovNow

The WeGovNow project aims at tapping into emerging technologies for effectively

supporting co-production by civic society stakeholders and collective proposition

development, whereby citizens are seen as partners as opposed to customers in the delivery

of public services. This is to be achieved by integrating a set of innovative information and

communications technology (ICT) applications within a unified citizen engagement platform.

Being a typical H2020 Research and Innovation project, the workplan of WeGovNow reflects

different operational project stages (Exhibit 1). By adopting a coherent approach towards

ethics across all pilot sites involved, the project sets out to provide a solid basis for ethical

service innovation in the local government domain across different jurisdictions.

In general, ethics have relevance to all human activities and endeavours. When it comes to

ICT-enabled forms of service delivery in the public domain, the combination of the inherent

properties of ICT applications (e.g. features enabling service automation) and the

vulnerabilities of particular populations groups (e.g. individuals with restricted or diminished

capacity to protect their own interests) has however led to a considerable amount of ethical

concern in particular.1 Beyond meeting legal data protection requirements, ethics here are

about what the involved stakeholders 'should' do as the right thing, for the good of people

as well as for the common good more generally.

At a generic level two main ethical perspectives can be discerned which deserve attention in

the framework of WeGovNow. To begin with, a range of ethical issues arise when it comes to

ensuring that technology development and piloting activities to be conducted within the

project do indeed follow commonly accepted ethical principles. Here, guidance can be

obtained from existing discourses on ethics in research fields that have relevance to the

project. Further to this, ethical issues arising in relation to the deployment of mainstream

government services deserve attention as well, e.g. when it comes to preparing and planning

the further mainstreaming of WeGovNow solutions beyond the immediate project duration.

1 The EGE (European Group on Ethics in Science and New Technologies) opinion on Ethical Issues of

Healthcare in the Information Society (1999; Opinion 13) reflects on such concerns and lists the following applying to the area of health care, but which are equally relevant today for the application of ICTs in the public service domain more generally: the pervasiveness of a technology which many people do not understand; the lack of transparency that may be brought to the work of healthcare professionals and its effects on the doctor/patient relationship; the difficulty in respecting privacy and confidentiality when third parties may have a strong interest in getting access to electronically recorded and stored personal data; the difficulty in ensuring the security of shared personal data and the lack of adequate infrastructure in certain regions and the absence of computer literacy in certain sections of the population which may reinforce existing inequalities.


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Also, there are ethical concerns that cut across the “research” and the “deployment”

perspectives, e.g. when it comes to ensuring data privacy in relation to individuals

participating in the technology development process and in relation to citizens supposed to

utilize the WeGovNow services beyond the immediate project duration.

Ensuring gender equality represents another area of concern cutting across the perspectives

of “research ethics” and “deployment ethics”. From a research perspective, gender

management in the framework of WeGovNow means, in particular, integrating gender

equality issues at each stage of the project cycle, following the three objectives of the

Commission’s activities on gender equality in Horizon 20202:

Fostering gender balance in research teams;

Ensuring gender balance in decision-making, “in order to reach the Commission’s target

of 40% of the under-represented sex in panels and groups (50% for Advisory Groups)”;

Integrating gender/sex analysis in research and innovation content as a means to

“improve the scientific quality and societal relevance of the produced knowledge,

technology and/or innovation”.

From a deployment perspective, it needs to be ensured that women and men are able to

equally participate in the collaborative processes which are to be ultimately supported by

WeGovNow solutions.

As graphically summarised below, the WeGovNow approach towards ethics and gender

management addresses all three areas of ethical concern (“research ethics”, “deployment

ethics” and cross-cutting issues).

Exhibit 1: The WeGovNow conceptual approach towards ethics and gender management

Source: The authors

2 European Commission (2016) ‘H2020 Programme – Guidance on Gender Equality in Horizon 2020’, Version

2.0, URL: https://ec.europa.eu/programmes/horizon2020/en/h2020-section/promoting-gender-equality-research-and-innovation

Requirements

elicitation

Service definition

&

specification

Pilot operation

&

evaluation

Project outcome

exploitation

• Ethics for research

involving

human beings

• Ethical codes of conduct

in the public sector

• Data privacy legislation

• Participatory GIS ethics

• Gender equality principles

Research Ethics Deployment Ethics

https://ec.europa.eu/programmes/horizon2020/en/h2020-section/promoting-gender-equality-research-and-innovation



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Against this background, there is a set of issues relating to ethics and gender aspects which

can potentially arise along the overall project’s life cycle. In the following subsections,

existing ethical value frameworks which WeGovNow can rely upon for its own purposes are

briefly presented.

2.1 Ethical research involving human beings

From a historical perspective, the so called Belmont Report (1979) has for the first time

made a distinction in the domain of ethics between ‘research’ and ‘practice’. Although the

focus was on medical research, basic ethical principles that were formulated in the report for

the first time have relevance for research involving human beings more generally. These

include the principles of respect for persons; beneficence (do no harm, maximize possible

benefits) and justice. WeGovNow is not a classical research project in the sense of the

Belmont Report. It does not intend to involve individuals with particular characteristics in

dedicated research activities, e.g. experiments or randomised controlled trials. Rather,

citizens in general are to be consulted for the purposes of collaborative ICT-based service

development and piloting, as set out in the project’s workplan. Nevertheless, the conceptual

approach to collaborative ICT-based service development taken by WeGovNow is inspired by

the concept of community-based participatory research, which not at least reflect core

ethical principles set out in the Belmont Report. This implies a partnership approach to

research that equitably involves community members, organisational representatives, and

researchers in all aspects of the research process and in which all partners contribute

expertise and take part in decision making.

Ethical considerations are continuous in community engagement processes. What happens if

a person is in a process but a decision is made that she or he is unhappy with? For example,

if the group decides to exclude other people. What do researchers do when the community

comes to a view that is factually incorrect?3

Shallwani & Mohammed (2007)4 and Felzmann (2014)5 list some fundamental principles of

research ethics in community-based research6:

Respect for persons entails respecting the dignity of research participants and ensuring their

autonomy. In cases where autonomy may be diminished, people should be protected from

any exploitation that results due to their vulnerability. This principle is important because

adherence to it entails that people will not be merely a means to achieve the research

objectives, and that the views and interests of all stakeholders should be taken seriously.

3 Wellcome Trust, The (2011) ‘Community Engagement – under the Microscope’, report, URL:

https://wellcome.ac.uk/sites/default/files/wtvm054326_0.pdf 4 Shallwani & Mohammed (2007) ‘Community-Based Participatory Research: A Training Manual for

Community-Based Researchers’, URL: http://www.livingknowledge.org/resources/toolbox/ 5 Felzmann, H. (2014) ‘Ethics of Community - Higher Education Engagement’, Campus Engage Guide, URL:

http://www.campusengage.ie/userfiles/files/Ethics%20of%20Community-HE%20Engagement%20WEB.pdf 6 Definitions taken from Mack, N. et al. (2005) ‘Qualitative Research Methods: A Data Collector’s Field Guide’,

Family Health International. URL: http://www.fhi.org/en/RH/Pubs/booksReports/QRM_datacoll.htm

https://wellcome.ac.uk/sites/default/files/wtvm054326_0.pdf

http://www.livingknowledge.org/resources/toolbox/

http://www.campusengage.ie/userfiles/files/Ethics%20of%20Community-HE%20Engagement%20WEB.pdf

http://www.fhi.org/en/RH/Pubs/booksReports/QRM_datacoll.htm


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Beneficence requires a commitment to minimising the risks associated with research,

including psychological and social risks, and maximising the benefits that accrue to research

participants. Researchers must articulate specific ways how this will be achieved.

Fairness requires a commitment to ensuring a just distribution of the risks and benefits of

research. Research participants should share in the benefits of the knowledge gained.

Therefore, the research participants should be people who are expected to benefit from the

knowledge gained through the project.

Accountability: Professional stakeholders are accountable for their actions towards other

stakeholders in the community. Particular responsibility accrues to consortium

representatives who design and implement the project.

Respect for communities means that researchers must respect the values of the community

involved in the research and protect the community from harm. This is very important in

research which requires communitywide knowledge, values, and relationships and, thus, the

community may be impacted by the research process or its outcomes.

Confidentiality: It is very important to ensure the confidentiality of participants in a research

project at all times. Identifying information should not be used when discussing results with

anyone, including other researchers. This holds true even when sharing anecdotes or

statements that seem inconsequential. When storing data or discussing the results of a

project, care should be taken to eliminate names and other identifying information. Before

any research project is undertaken, it is imperative to discuss how the confidentiality of

participants will be maintained.

Informed voluntary consent: It is imperative to ensure that participants understand the

implications of participating in a research project so that they are able to make an informed

decision about whether or not they would like to participate in a project. This entails

ensuring that participants understand the purpose of the research, what is expected of

them, the expected risks and benefits, and that participation is voluntary.

Right to refuse or withdraw at any time: It is imperative that participants have the right to

refuse to participate in the project or withdraw at any time without any negative

repercussions.

Reporting back: It is important that participants be given access to the findings of the

project once data analysis is completed. This will allow them to see how their data is being

represented and gain from the findings of the project.

Special consideration for vulnerable groups: Some groups are traditionally considered

vulnerable research participants. They include minors, older citizens, members of ethnic

minorities and persons with mental disabilities. Other groups such as people without

literacy, those with limited economic resources, and women who do not have decision-

making power regarding their participation in a project may also be vulnerable. Vulnerable

persons can still participate in a research project; however, they need special protections.

Those project activities and procedures involving citizens will be conducted in accordance

with the above principles. The WP leaders concerned and the pilot site managers will be


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requested on a regular basis to report on how this was achieved. Outcomes will be

presented in the respective management reports.

2.2 Participatory GIS and ethics

Participatory GIS (PGIS) practice, a core element of WeGovNow, is geared towards

“community empowerment through measured, demand-driven, user-friendly and integrated

applications of geo-spatial technologies. GIS-based maps and spatial analysis become major

conduits in the process. [...] The practice integrates several tools and methods whilst often

relying on the combination of 'expert' skills with socially differentiated local knowledge. It

promotes interactive participation of stakeholders in generating and managing spatial

information and it uses information about specific landscapes to facilitate broadly-based

decision making processes that support effective communication and community

advocacy”7.

Ethical questions have been very much at the centre of the debate about PGIS every since it

started to become promoted8. Pain (2004) observed that “in geographical research, ethical

codes have tended to be about having no negative impacts, not about the need to have

positive impacts. Viewing ethics alternatively as ‘processes that bring about more just social

relations’ [...] not only brings academic and participants’ notions of ‘ethics’ closer, but

necessitates a far more active approach to participation and change.”9

The PGIS Guide to Good Practice published by Rambaldi et al. (2006)10 gives an excellent

introduction into the ethical issues that need to be addressed when designing and carrying

out PGIS in practice. They start from an overview of the main questions which PGIS

researchers need first to become aware about and then answer, see table below.

Exhibit 2: Participatory GIS – Compilation of ‘Who?’ and ‘Whose?’ Questions

Stage I: Planning

Who participates?

Who decides on who should participate?

Who participates in whose mapping?

… and who is left out?

Who identifies the problem?

Whose problems?

Whose questions?

Whose perspective?

… and whose problems, questions and perspectives are left out?

Stage III: Resulting information control, disclosure and disposal

Who owns the output?

Who owns the map(s)?

Who owns the resulting data?

What is left with those who generated the information and shared their knowledge?

Who keeps the physical output and organises its regular updating?

Whose analysis and use?

Who analyses the spatial information collated?

7 https://en.wikipedia.org/wiki/Participatory_GIS, accessed 07-07-2016, 13:00

8 Elwood, S. (2006) ‘Critical Issues in Participatory GIS: Deconstructions, Reconstructions, and New Research

Directions’, Transactions in GIS 10:5, 693–708. 9 Pain, R. (2004) ‘Social geography: participatory research’, Progress in Human Geography 28, 5, pp. 652–663.

10 Rambaldi, G. et al. (2006) ‘Practical ethics for PGIS practitioners, facilitators, technology intermediaries and

researchers’, PLA 54:106-113, London: IIED, URL: http://pubs.iied.org/pdfs/G02155.pdf

https://en.wikipedia.org/wiki/Participatory_GIS

http://pubs.iied.org/pdfs/G02155.pdf


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Stage II: The mapping process

Whose voice counts? Who controls the process?

Who decides on what is important?

Who decides, and who should decide, on what to visualise and make public?

Who has visual and tactile access?

Who controls the use of information?

And who is marginalised?

Whose reality? And who understands?

Whose reality is expressed?

Whose knowledge, categories, perceptions?

Whose truth and logic?

Whose sense of space and boundary conception (if any)?

Whose (visual) spatial language?

Whose map legend?

Who is informed what is on the map? (Transparency)

Who understands the physical output? And who does not?

And whose reality is left out?

Who has access to the information and why?

Who will use it and for what?

And who cannot access and use them?

Stage IV: Outcomes

What has changed? Who benefits from the changes? At whose costs?

Who gains and who loses?

Who is empowered and who is disempowered?

Source: Adapted from Rambaldi, G. et al. (2006), p. 108

Code of ethics also relevant to WeGovNow are those applicable for GIS professionals in

general (e.g. GIS Code of Ethics published by the GIS Certification Institute11) and for

practitioners of anthropology and ethnography (e.g. the AAA Code of Ethics12). In Europe,

Iphoven’s (2013) report on “Research Ethics in Ethnography/Anthropology” is of particular

value. The report was commissioned by the Ethics Unit B6, DG Research and Innovation of

the European Commission13.

These aspects will be included in a dedicated data privacy and ethics assessment of the

WeGovNow solutions towards the end of the 1st project year. Outcomes will be reported in

D1.2 respectively.

2.3 Data privacy

Privacy of users is an issue for WeGovNow in service development, provision and evaluation.

Such ethical considerations will be furthered when preparing the roll out of the WeGovNow

services after the immediate pilot duration, e.g. when it comes to business planning. There

are different ethical value frameworks which deserve attention throughout the project’s life

cycle. Apart from data protection legislation, these include voluntary guidelines concerning

privacy issues around geo-referencing data.

11

See www.gisci.org/code_of_ethics.htm 12

www.aaanet.org/committees/ethics/ethcode.htm 13

https://www.researchgate.net/publication/268522630_Research_Ethics_in_Ethnography Anthropology_by_Dr_Ron_Iphofen_AcSS_2_nd_October_2013_first_drafts_produced_for_comment_2011

http://www.gisci.org/code_of_ethics.htm

http://www.aaanet.org/committees/ethics/ethcode.htm

https://www.researchgate.net/publication/268522630_Research_Ethics_in_Ethnography%20Anthropology_by_Dr_Ron_Iphofen_AcSS_2_nd_October_2013_first_drafts_produced_for_comment_2011

https://www.researchgate.net/publication/268522630_Research_Ethics_in_Ethnography%20Anthropology_by_Dr_Ron_Iphofen_AcSS_2_nd_October_2013_first_drafts_produced_for_comment_2011


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2.3.1 European-level data privacy legislation

By adopting the Data Protection Directive of 1995 (Directive 95/46/EC) the European Union

set legally binding rules for the protection of individuals with regard to the processing of

personal data. Through this regulation basic principles for processing personal data have

been stipulated which have to be followed in all Member States:

Transparency

The data subject has the right to be informed when his personal data are being processed.

The controller must provide his name and address, the purpose of processing, the recipients

of the data and all other information required to ensure the processing is fair. (art. 10 and

11). Data may be processed only under the following circumstances (art. 7):

when the data subject has given his consent;

when the processing is necessary for the performance of or the entering into a

contract;

when processing is necessary for compliance with a legal obligation;

when processing is necessary in order to protect the vital interests of the data

subject;

when processing is necessary for the performance of a task carried out in the public

interest or in the exercise of official authority vested in the controller or in a third

party to whom the data are disclosed;

when processing is necessary for the purposes of the legitimate interests pursued by

the controller or by the third party or parties to whom the data are disclosed, except

where such interests are overridden by the interests for fundamental rights and

freedoms of the data subject.

The data subject has the right to access all data processed about him. The data subject even

has the right to demand the rectification, deletion or blocking of data that is incomplete,

inaccurate or isn't being processed in compliance with the data protection rules. (art. 12)

Legitimate purpose

Personal data can only be processed for specified explicit and legitimate purposes and may

not be processed further in a way incompatible with those purposes. (art. 6 b)

Proportionality

Personal data may be processed only insofar as it is adequate, relevant and not excessive in

relation to the purposes for which they are collected and/or further processed. The data

must be accurate and, where necessary, kept up to date; every reasonable step must be

taken to ensure that data which are inaccurate or incomplete, having regard to the purposes

for which they were collected or for which they are further processed, are erased or

rectified; The data shouldn't be kept in a form which permits identification of data subjects

for longer than is necessary for the purposes for which the data were collected or for which

they are further processed. Member States shall lay down appropriate safeguards for

personal data stored for longer periods for historical, statistical or scientific use. (art. 6)


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When sensitive personal data (can be: religious beliefs, political opinions, health, sexual

orientation, race, membership of past organisations) are being processed, extra restrictions

apply. (art. 8).

In January 2012, the European Commission proposed a comprehensive reform of data

protection rules in the EU.14 After over four years of discussion, a new General Data

Protection Regulation (GDPR)15 has now been adopted. While the Regulation has

entered into force on 24 May 2016, it shall apply from 25 May 2018. The objective of this

new set of rules is to strengthen the citizens’ role in controlling their personal data, and

to simplify the regulatory environment for business. Also, the new Directive foresees

specific rules for the transfer of personal data outside the EU to ensure the protection of

personal data when it is exported abroad. Apart from this some, a number of new

requirements have been put in place with the new GDPR when compared with the data

Protection Directive of 2005 such as:

Privacy by design (cf. art. 25):

When designing new services and applications, the principles of data protection by

design and by default should be taken into consideration. The GDPR mentions some

examples what this might mean in practical terms. Such measures could consist, inter

alia, of minimising the processing of personal data, pseudonymising personal data as

soon as possible, transparency with regard to the functions and processing of personal

data, enabling the data subject to monitor the data processing, enabling the controller to

create and improve security features. The data controller shall implement appropriate

technical and organisational measures for ensuring that, by default, only personal data

which are necessary for each specific purpose of the processing are processed.

Data protection officers (cf. art. 37 ff):

In certain circumstances data controllers and processors must designate a Data

Protection Officer (the DPO) as part of their accountability programme. The threshold is

(i) processing is carried out by a public authority, (ii) the core activities of the controller

or processor consist of processing which, by its nature, scope or purposes, requires

regular and systematic monitoring of data subjects on a large scale, or (iii) the core

activities consist of processing on a large scale of special categories of data.

Consent (cf. art. 7):

A data subject’s consent to processing of their personal data must be as easy to

withdraw as to give consent. Consent must be “explicit” for sensitive data. The data

controller is required to be able to demonstrate that consent was given. Existing

consents may still work, but only provided they meet the new conditions.

Fair processing notice (cf. art. 12 ff):

Data controllers must continue to provide transparent information to data subjects. This

must be done at the time the personal data is obtained. However, the requirements in

14

http://ec.europa.eu/justice/data-protection/reform/index_en.htm (latest access: 22/05/2016) 15

Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation)

http://ec.europa.eu/justice/data-protection/reform/index_en.htm


15

the GDPR are more detailed than those in the current Directive. For instance, the

information to be provided is more comprehensive and must inform the data subject of

certain of their rights (such as the ability to withdraw consent) and the period for which

the data will be stored.

Data breach notification (cf. art. 33 f):

Data controllers must notify most data breaches to the Data protection Authority (DPA).

This must be done without undue delay and, where feasible, within 72 hours of

awareness. A reasoned justification must be provided if this timeframe is not met. In

some cases, the data controller must also notify the affected data subjects without

undue delay.

According to the GDPR (art. 40 ff), the Member States, the supervisory authorities, the Board

and the Commission shall encourage the drawing up of codes of conduct intended to

contribute to the proper application of this new Regulation, taking account of the specific

features of the various processing sectors. Also, the development of appropriate certification

processes is stipulated in the GDPR. It can however be expected that more specific guidance

materials will not become available during the life time of the WeGovNow project.

Against this background, Task 1.3 will focus on assessing of the WeGovNow platform and

individual applications in relation to potential non-conformity with data privacy legislation

along the line of an approach stipulated in GDPR (cf. art. 35) as follows:

The envisaged processing operations of personal data and the purposes of the

processing will be identified / described, including, where applicable, the legitimate

interest pursued by the data controller.

The necessity and proportionality of the processing operations will be assessed in

relation to the purposes;

Potential risks to the rights and freedoms of data subjects will be assessed.

Provided any risks can be identified, measures envisaged to address these will be

identified / described.

Technology wise, the WeGovNow solutions will be gaining in shape only throughout the

project’s service specification and development phase (cf. WP2 and WP3). Such an

assessment will therefore be conducted towards the end of the 1st project years, and its

outcomes will be reported in the D1.2 (Consolidated Conceptual & Methodological

Framework v2).

2.3.2 National-level data privacy legislation

Following the adoption of the European Data Protection Directive of 1995 a set of common

rules have been transposed by all EU countries into national laws. The table below

summarises the legal situation in WeGovNow pilot countries . National regulation/legislation

may however go beyond the principles set out in the Commission’s Communication, or they

may set out particular interpretation of the general principles stipulated by EU-level

regulation. Once the GDPR is in effect, the current Data Protection Directive 95/46/EC is


16

repealed. Although Member States will need to consider the impact on national legislation,

it may take some time until any revisions of relevant national laws which might become

necessary in one or another case will ultimately be enacted. For the time being, any

particular requirements going beyond those stipulated in European-level legislation will thus

be identified from national data privacy legislation as it currently exists. Outcomes will be

reported again in D1.2 (Consolidated Conceptual & Methodological Framework v2).

Exhibit 3: Overview of national data protection legislation to be taken into account

Regulative situation regarding data protection

IT In 1996, the Italian Data Protection Act was enacted to implement the European

Union Data Protection Directive. It covers both government agencies and the

private sector. In addition several Decrees relating to data protection have been

issued, addressing issues such as security requirements, the processing of medical

information, the processing of information for journalistic, scientific or research

purposes, and personal data stored by public bodies. The Privacy Law of 2003

rules the treatment of personal data in any application field. During the past few

years the Garante della protezione dei dati personali, a national oversight body,

has dealt with a number of issues related to the protection of personal data in the

health arena. Increasing utilisation of video surveillance systems in public places

has been addressed by the Garante as well. The data protection ombudsman

issued guidelines for the installation of surveillance cameras in various settings.

UK The Data Protection Act of 1998 implements the requirements of the European

Union's Data Protection Directive. The Act covers records held by government

agencies and private entities. The Act is quite complex and provides for limitations

on the use of personal information, and access to and correction of records and

requires that entities that maintain records register with the Information

Commissioner. There are also several other laws that affect privacy, e.g. in relation

to medical records. The Data Protection and Freedom of Information are enforced

by the Office of the Information Commissioner, an independent agency.

2.3.3 Specific privacy aspects to the utilisation of geo-referenced data

Apart from the data privacy requirements applicable to all types of data, special attention

needs be given to geo-referenced data, where identifying spatial references such as point

co-ordinates also have a geo-spatial value. Such data constitutes a considerable part of the

data expected to be produced and used in WeGovNow.

Geo-coded social media data provided by a diffuse network of self selected users presents a

rich data source that can, once filtered and analysed with sufficient care, provide useful

input to WeGovNow service development and research. Lovelace et al. (2014)16

demonstrate the use of Twitter data related to museum visits, for which they were able to

16

Lovelace, R. et al. (2014) ‘Geotagged tweets to inform a spatial interaction model: a case study of museums’, paper presented at GISRUK2014, URL: http://arxiv.org/abs/1403.5118

http://arxiv.org/abs/1403.5118


17

use tweets sent from mobile devices by users who have explicitly opted to publish their

present location. The problem is that many users who opt to publish their location on their

mobile device might be either unaware of the fact that messages, photos etc. sent from their

cell phones contain geo-location, especially with such accuracy; or what actual

consequences publishing the information may have. Here, again, what is legal must not

necessarily be ethical.

There has, in general, been much enthusiasm among researchers about the potential of

social media analytics, in the context of which ethical considerations have been heavily

debated. Grubmüller et al. (2013)17, based on work in the UniteEurope FP7 project (2011-

2014)18, stress the issue of ‘informed consent’: “Being in compliance with the law is one step

to diminish ethical concerns, but must be considered a minimum standard only for coming

up to ethical requirements concerning data protection. In this regard, the lack of ‘informed

consent’ is an issue that requires precautions in order to protect the authors of postings who

might not be aware of the public availability of their contents, let alone of their deployment

for research purposes”19.

In practical terms, data protection issues with geo-referenced data can usually not be

addressed by removing spatial references prevents disclosure, as this would mean that all

geographical information is lost, making the data all but useless for the purposes of

WeGovNow. A better option, as suggested by the UK Data Archive guidelines20, may be to

keep spatial references intact and to impose access regulations on the data instead. As an

alternative, point co-ordinates may be replaced by larger, non-disclosing geographical areas

or by meaningful alternative variables that typify the geographical position.

These issues will be further explored during the project’s service specification and

development phase. The preferred solutions will be included in the data privacy and ethics

assessment of the WeGovNow solutions towards the end of the 1st project year. Outcomes

will be reported in D1.2 respectively.

2.4 Ethical codes of conduct in the public sector

In the public sector, codes of conduct are generally value-based guides on how public

officials should behave, and outline what they should – and should not – do on the job.

Historically, ethical codes have first emerged in relation to public service delivery within the

healthcare domain, thereby focussing mainly on the doctor-patient relationship, that is, on

17

Grubmüller, V., Krieger, B., Götsch, K. (2013). Social Media Analytics for government in the light of legal and ethical challenges, In: Parycek, P. & Edelmann, N. (eds.) CeDEM13 – Conference for E-Democracy and Open Government, pp. 199-209

18 UniteEurope developed a social media analytics (SMA) and decision support tool for European cities and

NGOs. See http://www.uniteeurope.org/ 19

Krieger et al. (2012) ‘Legal, Cultural, and Ethical Aspects’, Project report. UniteEurope, URL: http://www.uniteeurope.org/images/deliverables/UniteEurope_D2.6.pdf

20 Corti, L. et al. (2011) ‘Managing and Sharing Research Data. A Guide to Good Practice’, London: SAGE

Publications.

http://www.uniteeurope.org/

http://www.uniteeurope.org/images/deliverables/UniteEurope_D2.6.pdf


18

the duty of the doctor towards the presenting patient. In more recent times, dedicated

ethics codes have also emerged in relation to the public sector more generally. A particular

aspect deserving attention in this context concerns the fact that more and more public

services are provided by third-party organisations outside the conventional public sector.

Dedicated ethics frameworks such as the one suggested by the Committee on Standards in

Public Life in the UK21 can serve as an instrument for pursuing common ethical standards

regardless of who is providing public services. Also, dedicated guidelines and codes of

conducts have emerged at the regional and or municipal governance levels in some

countries. For instance, at the WeGovNow pilot site in the UK Southwark Council has

developed a dedicated code of governance in line with the six core principles of good

governance taken from “The Good Governance Standard for Public Services” (2004) which

again was developed by the Independent Commission on Good Governance in Public

Services.22 Moreover, the Council signed up to an Ethical Home Care Charter in 2013.23 The

other two WeGovNow pilot sites are situated in Italy where a national code of conduct

applying to non-elected government servants was adopted already back in the 1990s.24

To ensure that the WeGovNow platform and services to be piloted will comply with ethical

codes of conduct prevailing at the pilot sites these will be considered in the framework of

the data privacy and ethics assessment of the WeGovNow solutions towards the end of the

1st project year. Outcomes will be reported in D1.2 respectively.

2.5 Gender equality

WeGovNow seeks to integrate gender equality issues at each stage of the project. The focus

here is:

First, on making sure the project itself is managed in a gender-sensitive way by fostering

gender balance in research teams and in decisions-making structures and processes

operating at project level.

Second, gender equality needs to be sought in the external structures and bodies

advising the projects in strategic issues, most notably the Project Advisory Board. The

European Commission’s target in this respect is 40% of the under-represented sex in

panels and groups, and 50% for Advisory Groups25;

Third, integrating gender analysis in research and innovation content as a means to

improve the scientific quality and societal relevance of the produced knowledge,

21

Committee on Standards in Public Life (2014): Ethical standards for providers of public services 22

http://www.southwark.gov.uk/info/200494/how_we_work/521/code_of_corporate_governance (latest access: 28/06/2016)

23 http://www.southwark.gov.uk/news/article/1470/southwark_signs_up_to_ethical_home_care_charter

(latest access: 28/06/2016) 24

http://www.oecd.org/dataoecd/61/33/35526972.pdf (latest access: 28/06/2016) 25

European Commission (2016) ‘H2020 Programme – Guidance on Gender Equality in Horizon 2020’, Version 2.0, URL: https://ec.europa.eu/programmes/horizon2020/en/h2020-section/promoting-gender-equality-research-and-innovation

http://www.southwark.gov.uk/info/200494/how_we_work/521/code_of_corporate_governance

http://www.southwark.gov.uk/news/article/1470/southwark_signs_up_to_ethical_home_care_charter

http://www.oecd.org/dataoecd/61/33/35526972.pdf




19

technology and innovation. As WeGovNow deals with engagement of citizens/residents

in social/civic activities at community level, the need to incorporate the gender

dimension in the project’s activities is obvious.

A substantial body of knowledge exists, for example, on gender differences in the areas of

food, housing and mobility. The “Gender in EU funded Research” FP7 project26 concluded

from the available evidence that, “as society attributes different roles to men and women,

their needs and interests in the areas of food, housing and mobility are different and their

respective ‘research needs’ are likely to be very different too. Deliberative processes

designed to involve civil society stakeholders in the decision-making process regarding the

research agenda on these themes should thus ensure that these differentiated needs of men

and women are taken into consideration equally. It is important that the deliberative

processes are set up in such a way that men and women can participate equally in them,

that their participation is balanced and that their respective needs are equally identified and

valued. Representatives from women’s organisations should be actively involved in the

consultation process”.27

Against this background, relevant questions for the WeGovNow project are:

How will the consortium ensure that the civil society organisations that will be involved

in the deliberative processes represent both men’s and women’s interests?

Will gender differences be explicitly addressed in the discussions and during the

workshops and conferences?

Will the consortium achieve a balanced representation of men and women among the

participants and speakers in workshops and conferences?

WeGovNow will make use of best practice and existing value frameworks in the area of

gender equality in community engagement, e-democracy, participatory GIS and related

fields.

A reference of particular importance to WeGovNow is the European Charter for Equality of

Women and Men in Local Life, launched in 2006 by the Council of European Municipalities

and Regions (CEMR). The introduction of the Charter stresses some of the reasons why

gender equality is of much importance for initiatives focusing on the local level, such as

WeGovNow:

“Equality of women and men constitutes a fundamental right for all, and an

essential value for every democracy. In order to be achieved, this right needs not

only to be legally recognized, but to be effectively applied to all aspects of life:

political, economic, social and cultural.

Despite numerous instances of formal recognition and progress made, equality of

women and men in daily life is still not a reality. Women and men do not enjoy the

26

www.yellowwindow.com/genderinresearch 27

Yellow Window (ed)(2012) ‘Gender in EU-funded Research: A Toolkit’, Module 2, URL: http://www.yellowwindow.com/genderinresearch/index_downloads.html

http://www.yellowwindow.com/genderinresearch

http://www.yellowwindow.com/genderinresearch/index_downloads.html


20

same rights in practice. Social, political, economic and cultural inequalities persist –

for example, salary disparities and political under-representation.

These inequalities are the results of social constructs built upon numerous

stereotypes present in the family, education, culture, the media, the world of work,

the organisation of society… So many domains in which it is possible to act, adopting

a new approach and making structural changes.

[...]If we are to achieve a society based on equality, it is essential that local and

regional governments take the gender dimension fully into account, in their policies,

their organisation and their practices. And in today’s and tomorrow’s world, the real

equality of women and men is also key to our economic and social success – not just

at European or national levels, but also in our regions, towns and local

communities.”28

The following articles appear to be of particular relevance for WeGovNow29:

(1.2) The Signatory recognizes that the right to equality of women and men is a

fundamental prerequisite of democracy, and that a democratic society cannot afford to

ignore the skills, knowledge, experience and creativity of women. To this end, it must

ensure, on a basis of equality, the inclusion, representation and involvement of women

from different backgrounds and of different age groups in all spheres of political and

public decision-making.

(2.5) The Signatory commits itself to promote and apply the principle of balanced

representation to its own decision-making and consultative bodies, and in its

appointments to external bodies. However, where the authority does not currently enjoy

a balanced representation of women and men, it will implement the above on a basis no

less favourable to the minority gender than its current gender balance.

(3.2) In relation to the different forms of public participation in its own affairs, for

example via advisory committees, neighbourhood councils, e-participation or

participatory planning exercises, the Signatory commits itself to ensure that women and

men are able to participate equally in practice. Where existing means of participation do

not lead to such equality, it undertakes to develop and test new methods.

(3.3) The Signatory undertakes to promote the active participation in its political and

civic life of women and men from all sections of the community, in particular of women

and men from minority groups who may otherwise be excluded.

(25.1) The Signatory recognizes the importance of its spatial, transport, economic

development and land use policies and plans in creating the conditions within which the

right to equality of women and men in local life may be more fully achieved.

28

Council of European Municipalities and Regions (2006) ‘European Charter for Equality of Women and Men in Local Life’, URL: http://www.charter-equality.eu/the-charter/la-presidence-en.html?lang=en

29 CEMR also runs an observatory on the topics addressed by charter, including a repository of good practices

from which WeGovNow can benefit, see http://www.charter-equality.eu/?lang=en

http://www.charter-equality.eu/the-charter/la-presidence-en.html?lang=en

http://www.charter-equality.eu/?lang=en


21

(25.2) The Signatory commits itself to ensure that, in drawing up, adopting and

implementing such policies and plans:

o the need to promote effective equality in all aspects of local life is fully taken into

account;

o the specific needs of women and men, in relation for example to employment,

access to services and cultural life, education and family responsibilities, based on

relevant local and other data, including the signatory’s own gender assessments,

are properly taken into account;

o high quality design solutions are adopted which take into account the specific

needs of women and men.

The WeGovNow project will be conducted in accordance with the above principles. The WP

leaders concerned and the pilot site managers will be requested on a regular basis to report

on how this was achieved. Results will be presented in the respective management reports.

3 WeGovNow ethics and gender management framework

Exhibit 4 below presents the ethics and gender management framework to be adopted for

the purposes of WeGovNow. Based on the ethical value frameworks discussed in the

previous chapter, it is structured according to key issues to be addresses throughout the

project’s life cycle and measures to be pursued by the project for addressing these. Also, the

framework identifies which party will be responsible for monitoring progress concerning

these measures and means of outcomes reporting respectively. Beyond this, generic

guidance on operational aspects raised by the ethics and gender management framework is

presented in dedicated subsections. Where required further guidance will be developed and

reported as set out in Exhibit 4.


22

Exhibit 4: The WeGovNow ethics and gender management framework

Issue Measure Monitoring & reporting

Involvement of end users in

project activities

The basic principles of community-based research for involving human

subjects are to be adhered to in relation to all project activities involving end

users: respect for persons, beneficence, justice, respect for communities,

confidentiality, informed voluntary consent, right to refuse and withdraw at

any time, reporting back and special consideration for vulnerable groups.

Monitoring by WP leaders concerned in

collaboration with pilot site managers

Reporting to the CEC within periodic

management report

The recruitment procedures and criteria to be chosen for community

engagement activities at local level will be described in D2.1. As part of Task

1.3, these will be assessed in relation whether they could result in

discriminatory practices and/or enhancement of

vulnerability/stigmatisation. If such practices are inevitable, as a

consequence of the methodology, measures to be taken to mitigate them

will be identified.



Reporting to the CEC within D1.2

The consortium partners will seek advice by relevant bodies in their

countries whether a formal ethics approval will be required. As far as

required by national regulation/legislation and/or research institutions,

partners will seek ethical approval of the planned piloting activities from

relevant ethics committees.

Monitoring by ethics and data protection

manager in collaboration with pilot site

managers


management report

A common procedure for obtaining informed consent form the participants

in the WeGovNow pilots will applied across all pilot sites as will be set out in

the project’s consolidated conceptual and methodological framework (D1.2)

Monitoring by ethics and data protection

manager in collaboration with pilot site

managers


management report

All pilot sites are to follow a common data protection protocol when

involving end users in the project. This will include procedures to be

implemented for data collection, storage, protection, retention and



Reporting to the CEC within annual


23


destruction as will be set out in the project’s consolidated conceptual and

methodological framework (D1.2). The latter will comply with national and

EU-level legislation.

management report

Participatory GIS In the framework of Task 1.3, the WeGovNow platform and applications to

be developed will be assessed against the criteria set out in available

guidelines (Rambaldi et. al. 2006).




Ethical codes of practice in

the public sector

Relevant codes of conduct prevailing at the WeGovNow pilot sites will be

identified and potential requirements on the WeGovNow platform /

applications be derived from these. The WeGovNow platform / applications

will then be assessed against identified requirements.




Conformity of the

WeGovNow platform &

services with data protection

legislation

A data protection impact assessment of the WeGovNow platform and

applications will be conducted in the framework of consolidating the

project’s conceptual and methodological framework (Task 1.3).




Gender equality All efforts will be made to foster gender balance in the project team and in

decision-making project consortium

Monitoring by WP5 leader in



management report

All efforts will be made to ensure that both men and women are equally

represented in community engagement activities and that gender

differences are explicitly addressed in discussions




management report

All efforts will be made to ensure that gender issues are adequately

considered when analysing any evaluation data generated in the framework

of the WeGovNow pilots




management report


24


All efforts will be made to ensure that both women and men are equally

represented in the project’s advisory board.




management report


25

3.1 Generic guidance on beneficence and non-malfeasance of end users participating in the project

The following principles should be considered when conducting project activities involving

end users:

The evaluation/piloting of WeGovNow services should be scientifically sound and the

purpose should be to contribute to knowledge;

The evaluation/piloting of WeGovNow services should be undertaken and supervised by

those who are appropriately qualified and experienced;

The importance of the objective should be in proportion to the inherent risk to the

subject;

The evaluation/piloting of WeGovNow services should be preceded by careful

assessment of predictable risks in comparison with foreseeable benefits to the subject or

to others;

Evaluation/piloting of WeGovNow services should not be undertaken where the hazards

involved are not believed to be predictable;

Adequate facilities and procedures should be in place to deal with any potential hazards.

3.2 Generic guidance on recruitment of end users participating in the project

End users are to participate in the project at different stages of the work plan, e.g. in use

case development and requirements elicitation as part of the agile platform development

process as well as in the operation of validation trials at three different locations and related

evaluation activities. To this end, both on-line and off-line engagement activities will be

pursued. The specific mix of end user characteristics to be involved at each project stage and

particular selection criteria to be applied respectively will be specified as part of a dedicated

user engagement plan developed for each site under WP2 (Task 2.1). At least three different

categories of users are envisaged to be involved:

individual citizens (and, where appropriate, local residents without citizenship status);

representatives of civil society organisations;

staff of public administrations.

In any case, participation in project activities is to be voluntary. The recruitment procedure

to be detailed as part of Task 2.1 will rely on a number of general principles:

participation will be voluntary;

participation will only be possible upon informed consent;

participants will have the right to refuse or withdraw at any time without any negative

repercussions.


26

3.3 Generic guidance on informed consent

The following principles should be considered in relation to achieving informed consent from

users participating in the project:

Each potential subject must be adequately informed of the aims, methods, anticipated

benefits and potential hazards of the research and any discomfort it may entail;

Any documentation given to potential participants should be comprehensible and there

should be an opportunity for them to raise any issues of concern;

Consent should be required in writing and records of consent should be maintained;

Potential participants must be informed that they are free to withdraw consent to

participation at any time;

There should be a procedure for making complaints and participants should be made

aware of this;

All participants should be volunteers. Considerable care should be taken where consent

is sought from those in a dependent position and it should be made clear that refusal to

participate will not lead to any adverse consequences. For example, clients of public

service providers must be assured that any decision not to participate will not prejudice

or affect in any way the services they currently receive;

Any inducement offered to participants should be declared and should be in accordance

with appropriate guidelines;

Consent must be obtained from a legal guardian in the case of minors or any others who

do not have the legal competence to give informed consent.

It is not envisaged that persons who do not have the legal competence to give informed

consent will participate in any project activities.

It is also not planned to involve vulnerable individuals whose vulnerability/stigmatisation will

potentially be enhanced by the project. The topic will be revisited at regular intervals in WP2

planning discussion and adequate action taken in case that vulnerable individuals will be

engaged in whatever ways. In general, user involvement within the project will adhere to the

commonly accepted ethical research principles of beneficence and non-malfeasance.

The operationalisation of the project’s approach towards pilot evaluation in terms of

evaluation techniques to be applied will be achieved by Task 4.1 (Evaluation Planning). In

case any personal data is to be gathered in this context, these will be anonymised for further

use by the project. It may also happen that data is to be gathered which is to be considered

as confidential. In both cases informed content will be sought from individuals involved. Two

generic consent forms are annexed to this document. These will be customised to the

particular circumstances prevailing at a given evaluation setting.

3.4 Generic guidance on formal ethics approval

At the European governance level, the EU Directive on Clinical Trials of 2001 requires

Member States to have in place a system of ethical review of clinical research projects. With


27

this Directive, the European Union envisioned a harmonization of research ethics

committees (REC’s) across Europe, including the time taken to assess a trial proposal and the

kinds of issues a committee should take into account. National ethical review systems

concerning clinical research do however not tend to be geared towards ICT-related pilot

projects in the public service domain more generally. As WeGovNow will not conduct a

clinical trial it is not expected that the project will need to seek formal ethics approval in

accordance with the European Clinical Trial Directive.

When it comes to research projects more generally, ethical review procedures tend to be in

place at the University-level in many countries. These differ considerably across individual

Universities when it comes to their thematic ambit and the particular assessment

procedures applied. In general, they are directed towards ensuring that the conduct of

research is compliant with basic principles of the protection of human rights and the dignity

of the human being. The table below summarises the situation in the WeGovNow pilot

countries. The project will seek advice from the competent authorities on whether formal

ethical approval will be required, and if so seek ethical approval of the pilots respectively.

Exhibit 5: National bodies responsible for ethics approvals

IT In relation to clinical research, local Ethics Committees are established by the organ of

administration of the public health facilities in which clinical trials are conducted. The

Regional Authorities are responsible for the accreditation of the Ethics Committees

working within their regions and for the transmission of the list of them to the Italian

Medicines Agency. Because no clinical research is planned in WeGovNow, approval

from local Ethics Committees is not required until further notice.

At university level (UniTo), the Comitato di Bioetica dell’Università di Torino,

although mainly responsible for clinical research, also needs to be asked for approval

in some cases of non-medical research involving human volunteers, e.g. to ensure

compliance with the Italian data protection code (Legislative Decree 196/2003). Initial

investigations by the UniTo project time suggest that WeGovNow will not require

approval from the Comitato di Bioetica dell’Università di Torino or another regulatory

body.

UK The United Kingdom Ethics Committee Authority (UKECA) has responsibility for

reviewing clinical trials of investigational medicinal products. Research studies other

than these are reviewed by NHS Research Ethics Committees (RECs), which are

established under policy from the relevant Health Departments in each of the four UK

countries. Because no clinical research is planned in WeGovNow, approval from

UKECA is not required until further notice.

At university level (University College London), all research proposals involving human

participants and the collection and/or study of data derived from human participants

undertaken by UCL staff or students requires ethical approval to ensure that the

research conforms with general ethical principles and standards. It is the responsibility

of the Head of Department to ensure that staff and students of the Department are

apprised of UCL's arrangements for research governance and the associated


28

procedures, the main components of which include UCL's Statement for Research

Integrity30 as well as the UCL Research Ethics Committee’s constitution, terms of

reference and guidelines31. Department Heads have final judgement as to whether a

particular activity should be exempt from the requirement for approval by the

Research Ethics Committee.

The procedure for assessing whether the research foreseen in WeGovNow will require

ethical approval from either the Research Ethics Committee or the Head of

Department is still ongoing at the time of writing.

3.5 Generic guidance on WeGovNow platform compliance with data protection legislation

Any data processing activities within the project will be carried out in accordance with

European and national data protection legislation. At the European governance level, the EU

Directive 95/46/EC will remain in force until 2018. From then on, the General Data

Protection Regulation (GDPR)32 will take effect. As discussed earlier in this document, all EU

countries have transposed the Directive of 2005 into national laws. The WeGovNow

platform and services will be assessed by the project in relation to their conformity with

European and national legislation. As far as required, the project will seek advice from the

competent authorities at national level.

When it comes to ensuring data privacy during the piloting process in particular, all pilot

sites are to follow a common data protection protocol as follows:

Only research/other personnel within the participating organisations should be granted

access to data.

All data must be made to be anonymous.

Only summaries of the quantitative data should be available. Excerpts (e.g. quotations)

from qualitative data may be included in any results section of any report or academic

publication.

Participants must be treated with respect at all times and their anonymity protected.

Pseudonyms or codes must be used to replace any identifiers within the data. Every

quotation must be made anonymous, using e.g. a pseudonym, when quotations from

interviews are to be included in reports and publications arising from the pilot

evaluation.

If participants wish to talk to interviewers about sensitive issues which they wish to

remain confidential, interviewers must not use what they hear in this context in any part

of the pilot evaluation.

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https://www.ucl.ac.uk/research/integrity 31

http://ethics.grad.ucl.ac.uk/ 32

Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation)

https://www.ucl.ac.uk/research/integrity

http://ethics.grad.ucl.ac.uk/


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Personal paper based details of participants must be kept in locked filing cabinets.

Transcription must be made anonymous

Data (transcripts, audio and video recordings) will be kept in locked cabinets.

Interview/focus group recording, transcription and analysis: It is essential that data is

made to appear anonymous. Reference numbers must be used to identify tapes,

transcriptions and data analyses.

All information that could be used to identify the participant (names, address, and

personal details) must be separated from the data permanently before analysis.

Reports must only contain selected passages of interview transcripts and must not

publish transcripts in their entirety.

Video recordings of persons will also be separated from identifiers permanently and will

not be used publicly.

3.6 Generic guidance on community engagement

Based on the general principles outlined in chapter Fehler! Verweisquelle konnte nicht

gefunden werden. above, the table below presents some guidelines for research and

development activities in WeGovNow. The resource the table is based on, namely the

Practical ethics for PGIS guidelines authored by Rambaldi et al. (2006), at some places makes

reference to participatory research in developing country contexts, i.e. is not always

applicable to the context for piloting in WeGovNow. The guidelines have been adapted to

account for this.

Exhibit 6: ”Practical ethics for PGIS” Guidelines as applied to WeGovNow

Guideline Application to WeGovNow

Be open and honest Project representatives must explain clearly and in the local language the strengths and limits of their ability to influence outcomes, and no claims must be made for results that are not within the power of the project to achieve.

Purpose: which purpose? and whose purpose?

Be certain and clear about the purpose – why do people get involved in this particular activity? Before embarking on the process, discuss openly the objectives of the activity and what the different parties may expect from it.

Obtain informed consent As in any research with people, participation must be voluntary (see section Fehler! Verweisquelle konnte nicht gefunden werden.). In order for participation to be voluntary, the participant needs to know what kind of output is generated based on their contribution (showing them an example would be ideal), the type of information that will be uploaded to the application, and the possible implications of the information being made public.

Recognise that you are working with socially differentiated communities

Be aware that the internal workings of socially differentiated communities are very context dependant and unpredictable. It will be impossible to prevent unintended consequences.


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Avoid raising false expectations

Any community engagement activity in WeGovNow is liable to raise expectations of some benefit, even when the project representative explains that few concrete changes may follow from the interaction. Opening up the space to map local expectations and negotiate the objectives may reduce the risk of raising unrealistic expectations.

Invest time and resources in building trust

Trust between project representatives and community members is the building block upon which good community engagement practice is founded.

Don’t rush Accept the fact that participatory approaches need time and are generally slow, and factor the time variable in your intervention schedule. The project workplan needs to take account of the possibility of delays in engagement processes, while of course still recognising the fact that the overall project duration is fixed.

Be considerate in taking people’s time

Time is a precious resource to almost everybody. Although residents are often polite, hospitable and deferential to researchers interested in their lives, project representatives still need to realise the sacrifices people are making. Duplication of activities should be avoided wherever possible.

Be flexible Despite the necessity for a long-range vision, the approach should remain flexible, adaptive, and recursive, without sticking rigidly to pre-determined tools and techniques, or blindly to the initial objectives of the engagement exercise.

Select ICT that is adapted to local environmental conditions and human capacities

Choose the appropriate technology with the objective to grant equal access to and control over it by all community members, where necessary by community-nominated intermediaries.

Do not sacrifice local perception of space in the name of precision

Spatial precision is relative and only has value when very detailed data on boundaries or areas is needed. Too often the emphasis is on precise measurements rather than on seeking and checking what are the spatial phenomena the people are really talking about.

Be careful in avoid causing tensions or violence in a community

While this guideline has been developed with rural developing country contexts in mind, Europe’s larger cities also have their fair share of tensions between groups of citizens. Within-group tensions also need to be taken into account, such as when women from ethnic minorities take part in participatory activities without the consent of their husbands, who when finding out about it become angry.

Put local values, needs and concerns first

Instances may arise where a course of action is beneficial to the needs of the associated research effort, but is significantly counter-productive in meeting the community’s needs. The ethical approach is to find alternative courses of action that are suitable to the community’s needs. Local people and their communities are the principals or partners, not the clients. So their participation is essential in the process of determining the purpose of a community engagement initiative.

Stimulate spatial learning and Refrain from extracting or eliciting information only for the


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information generation rather than mere data extraction for outsider’s analysis and interpretation

outsiders’ benefit. If research is the only purpose, be open and honest, seek permission and do your best to share benefits. This is a major issue with local knowledge of commercial value.

Focus on local expertise The aim here to to understand local culture, society, spatial cognition, and livelihoods, local resources, hazards and options, etc., and all of these relate to the urban sphere.

Prioritise the use of local toponomy (the meaning of geographic names)

This will help ensure understanding, ownership, and to facilitate communication between insiders and outsiders.

Ensure genuine custodianship Ensure that the original physical output of a participatory mapping exercise stays with those who generated it and specifically with a trusted entity nominated by the informants. Taking outputs away – even if for a short time – is an act of disempowerment. Those who generated the spatial information must not be deprived of their intellectual property (IP) and effort.

Be ready to deal with new realities which will emerge from the process

Visualising and geo-referencing local knowledge is likely to change the way space is perceived and understood by both the informants and the wider public affected by the mapping exercise. Such changes may influence power relations and hierarchies, and induce new conflicts or inflame latent ones. Provisions have to be made to eventually deal with new conflicting realities.

Observe the processes This increases understanding on both sides. Ask questions, probe, ask for explanations, e.g. why are there regularities and why anomalies in the results?

Ensure that the outputs of the mapping process are understood by all those concerned

Ensure that the look & feel of the electronic map is developed in consultation with informants and end users.

Acknowledge the informants If not prejudicial to the security of the informants, and with their prior consent, include the names of the contributors to the generated maps and/or data sets.

Review and revise the maps The maps are never final or static. They are not ‘cast in stone’ – they have to be crosschecked, improved, and updated, for which the electronic format is ideally suited.

Facilitators need to be properly trained

Training should include modules on personal behaviour and attitudes, the ethics of community engagement, and trust building.

Source: Adapted from Rambaldi et al. (2006), pp. 107-112.

3.7 Generic guidance on gender equality

Pilot site managers are asked to ensure that local project teams are fully aware of the

gender dimension of any community engagement activity planned within the framework of

the WeGovNow project. The following list of questions derived from the work of the


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“Gender in EU-funded Research” toolkit33 should be used for discussing relevant issues

concerning the practical implications of WeGovNow’s commitment to gender equality:

How will the pilot site team ensure that the local civil society organisations to be

involved in the deliberative processes represent both men’s and women’s interests?

Will gender differences be explicitly addressed in the discussions and during the

workshops and conferences?

Will the pilot site achieve a balanced representation of men and women among the

participants and speakers in local events such as workshops, conferences, mapping

parties?

As a general rule, project partners should seek:

strong participation of female researchers in the project, wherever possible aiming for a

share of 40% of women in research teams as measured by number of participants or

person hours spent on the project;

at least 40% share of each gender in members of the Project Advisory Board;

gender balance in any decision-making processes and bodies at the pilot sites;

at least 40% share of each gender in groups of external parties advising the project at

pilot sites;

use of moderation techniques (at meetings and workshops) which make sure that female

participants are given as much voice as males.

Consortium partners with responsibility for pilot site activities are recommended to provide

their staff with gender training. As stipulated in the annex of the Horizon 2020 Work

Programme, costs for this type of training are eligible for funding from the project budget.

The objective is to encourage researchers to further develop and share gender expertise in

relation to WeGovNow community engagement activities.

Data on gender management in WeGovNow will be collected regularly by the coordinator

and then analysed and reported in the periodic progress reports. For this purpose, each

project partner is asked to report on an annual basis data on:

% of women participants in WeGovNow project team;

% of person hours in WeGovNow worked by women;

% of women participating in community engagement activities at pilot sites;

% of women in groups of external parties advising the project at pilot sites.

In addition, the coordinator will compile data on:

% of women participants in the Project Advisory Board

% of women participants in meeting of the Project Advisory Board and other

The data will be reported in total numbers and percentages wherever appropriate, as in the

example shown below.

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Exhibit 7: Example of format for reporting gender data in periodic progress report


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4 Annex: Consent form templates

4.1 Generic Consent Form Template – Anonymous Data

I understand that my participation in the WeGovNow project will involve [provide brief

description of what is required, e.g. ...completing two questionnaires about my attitudes

toward controversial issues which will require approximately 20 minutes of my time.].

I understand that participation in this project is entirely voluntary and that I can withdraw

from the project at any time without giving a reason.

I understand that I am free to ask any questions at any time. I am free to withdraw or discuss

my concerns with [name].

I understand that the information provided by me will be held totally anonymously, so that it

is impossible to trace this information back to me individually. I understand that this

information may be retained indefinitely.

I also understand that at the end of the project I will be provided with additional information

and feedback about the purpose of the project.

I, ___________________________________(NAME) consent to participate in the project

conducted by [name]

Signed:

Date:


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4.2 Generic Consent Form Template- Confidential Data

I understand that my participation in the WeGovNow project will involve [provide brief

description of what is required, e.g., ...completing two questionnaires about my attitudes

toward controversial issues which will require approximately 20 minutes of my time.].

I understand that participation in this project is entirely voluntary and that I can withdraw

from the project at any time without giving a reason and without penalty.

I understand that I am free to ask any questions at any time. I am free to withdraw or discuss

my concerns with [name].

[select one of the two following paragraphs depending on design]:

I understand that the information provided by me will be held confidentially, such that only

the [name(s) of project team members where applicable] can trace this information back to

me individually. The information will be retained for up to [state amount of time data will be

held] when it will be deleted/destroyed. I understand that I can ask for the information I

provide to be deleted/destroyed at any time and I can have access to the information at any

time.

OR IF DATA IS TO BE EVENTUALLY ANONYMISED:

I understand that the information provided by me will be held confidentially, such that only

[name(s) of project team members where applicable] can trace this information back to me

individually. I understand that my data will be anonymised [state when this will happen, for

example at the end of the project or on a specific date] and that after this point no-one will

be able to trace my information back to me. The information will be retained for up to

[state amount of time data will be held] when it will be deleted/destroyed. I understand that

I can ask for the information I provide to be deleted/destroyed at any time up until the data

has been anonymised and I can have access to the information up until the data has been

anonymised.

I also understand that at the end of the project I will be provided with additional information

and feedback about the purpose of the project.

I, ___________________________________(NAME) consent to participate in the project

conducted by [name]

Signed:

Date:


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